Meet three children who faced frightening and disfiguring health problems -- and the extraordinary doctors who gave them a reason to smile again.
"My daughter's organs were outside her body"
In March 2000, Grace Helle was born with a rare large tumor -- called an omphalocele -- that contained most of her liver and intestines. Because of a flaw in the development of her abdominal wall, her organs had grown outside her body with only a thin membrane and skin over them. By the time Grace was 3, the omphalocele was the size of a volleyball. "I'd never seen one so big in a child that age," says Robert Foglia, MD, who was surgeon-in-chief at St. Louis Children's Hospital.
Omphalocele tumors are usually corrected at birth, but Grace's case was complicated by the fact that she also had a hole in her diaphragm that required surgery. "She was in the hospital with breathing problems six times in her first year," says her mother, Carol. "Our pediatrician recommended delaying the surgery to reinsert her liver and intestines until she was 5, so her body could grow stronger." For four and a half years, Grace wore an elastic bandage over her protrusion to protect her organs.
Grace's abdominal cavity was so small -- because of the missing organs -- that Dr. Foglia thought she'd need several operations to repair the defect. But he and a plastic surgeon devised a new procedure: They placed a tissue expander in her abdomen, and her parents added fluid to inflate it slowly over a month's time to make room for her organs.
In November 2004, Grace had surgery to remove the expander and put back her organs. The operation took only three hours, and she was home two weeks later, in time to celebrate a truly meaningful Thanksgiving.
Robert Foglia, MD, now a professor and chief of pediatric surgery at the University of Texas Southwestern Medical Center at Dallas.
"My daughter is now as beautiful outside as she is inside"
It was a bittersweet moment when the midwife handed Jin Ying Wang and her husband their newborn daughter in the Chinese village of Dacheng. Li Ying had a rare craniofacial cleft through her lips, palate, nose, and eye socket. "The midwife said she would die because she wasn't able to nurse, but I trickled spoonfuls of formula down her throat," recalls Wang. "Once I saw that I could feed her, I had hope. I felt that someday, a miracle would happen for her."
Despite Li Ying's radical birth defect, she survived and her mother eventually taught her to feed and dress herself. She spent time with neighbors and relatives but wasn't able to go to school because she looked so disturbing.
When Li Ying was 6, a doctor sent her photo to P. Craig Hobar, MD, at Children's Medical Center, in Dallas. He had founded the Leap Foundation, and he travels around the world with a team of volunteers to provide free surgery to children with facial deformities. Because Li Ying's case was so severe, Dr. Hobar arranged for her and her mother to come to Dallas for treatment. "Li Ying couldn't speak or eat properly because she had a big hole in the middle of her face instead of a mouth," recalls Dr. Hobar. "Her cleft actually extended into her brain -- I was amazed that she had lived such a healthy life so far."
During her first operation, in October 2005, Dr. Hobar spent 11 hours creating a nose and lips for Li Ying. After a four-day hospital stay, she spent several weeks at the Ronald McDonald House. Dr. Hobar performed a second surgery in December, reconstructing the roof of her mouth. Li Ying can now talk, eat, smile, and laugh with other children, and she excitedly started kindergarten back in China. Says Wang, "When I saw how beautiful she was, I was so happy I couldn't stop crying."
P. Craig Hobar, MD, head of craniofacial surgery at Children's Medical Center, in Dallas.
"My son lost half his brain"
In May 2004, Tamara Stapleton and her 4-year-old son, Jack, were cruising on an 18-foot motorboat when the unthinkable happened: Jack, who was wearing a life vest, tumbled off the front deck. Stapleton cut the motor and dove into the water, where she discovered Jack unconscious and covered in blood -- his head had been split open by the boat's propeller. "I was in shock, struggling to hold his head above the water," recalls Stapleton, who lives in Atlanta. Fortunately, a man in a nearby boat jumped in and pulled Jack back onto the deck, and another boater then rescued Stapleton, who'd fainted.
"When Jack came into the ER, the left side of his skull was shattered and half of his brain was gone -- nobody expected that he would live," says Gregory MacKay, MD, chief of plastic surgery at Children's Healthcare of Atlanta. "The pediatric neurosurgeons performed a skin graft to cover the shreds of his scalp, and they gave Jack drugs to induce a coma so he could rest. Then we all just had to wait and hope."
After a week, Jack came out of the coma. By mid-June, he was breathing on his own, and by the end of the month he was responding to voices with a smile. After four long months, Jack was ready to come home, but he was not the same little boy. His entire right side was paralyzed, and the language center of his brain had been literally destroyed.
Jack's fragile brain was covered by only a thin layer of skin and needed to be better protected in order to heal. Dr. MacKay worked with a company called Medpor to create a synthetic cap to replace the missing piece of Jack's skull. It was rigid enough to protect his brain but also porous, so that the tissue and blood vessels from his scalp could grow into it. "Nothing exactly like this had ever been done before," says Dr. MacKay.
Jack has made huge progress since having the cap implanted in August 2005. His brain is actually growing back -- and he can walk and speak in complete sentences. "We never imagined that he'd come this far," says Stapleton. Adds Dr. MacKay, "Children are unbelievably resilient."
Gregory MacKay, MD, director of the craniofacial program and associate chief of plastic surgery at Children's Healthcare of Atlanta-Egleston.